hcWGS inform data of neuroblastoma patients

• DS DUO:0000007 (version: 2019-01-07)disease specific researchThis data use permission indicates that use is allowed provided it is related to the specified disease.ModifiersMONDO:0005072
• NPUNCU DUO:0000018 (version: 2019-01-07)not for profit, non commercial use onlyThis data use modifier indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use.
• US DUO:0000026 (version: 2019-01-07)user specific restrictionThis data use modifier indicates that use is limited to use by approved users.

INFORM DAC: To get access to the data, send a request via mail to INFORM_info@dkfz.de. Additonally, the INFORM neuroblastoma coordinators have to be informed. This includes Frank Westermann (f.westermann@kitz-heidelberg.de), Matthias Fischer (matthias.fischer@uk-koeln.de) and Angelika Eggert (angelika.eggert@charite.de). A commitment to data privacy protection form (available upon request) has to be filled in, signed and sent to the INFORM coordination office. Please send scan via email and send the original signed document by post to: INFORM Trial Office, KiTZ Clinical Trial Unit / Ruth Witt, Im Neuenheimer Feld 130/3, 69120 Heidelberg, Germany

I undertake to use the sequencial data of patient IXX-XXX, obtained in the context of the INFORM register, exclusively for academic research purposes, like stated in the patient informed consent. The research activities comprise examinations of molecular, genetic, immunologic and other characteristics of the tumor disease, as well as the development of new therapeutic options or diagnostic methods where appropriate. I presented the research project „xxx“ to the heads of the GPOH study groups and/or National Coordinators concerned and to the INFORM Data Access Committee. Further, I received professional legal advice or a positive vote by the ethic committee, respectively. Before publication, the INFORM coordinators will be asked for their approval. The manuscript will be presented to them for review at least 4 weeks before submission. All applicable data protection laws are respected. Genetic data will be encoded and stored separately from clinical data. I ensure that these data at our institution are protected against access by any third parties. The data will not be passed on to unauthorized third parties. Equally, the codes necessary for re-identification will not be passed on to unauthorized third parties. No attempt is made to identify the respective patient via their genetic data. Future publications will not allow any conclusion regarding the person’s identity.